Search

Today is a happy one – we woke up to a beautiful winter day, a fresh dusting of snow filled the little circle leading up to our house, waiting for us to mark it with our tracks. After drinking our morning coffee and reading to Lauren, Stephen prepared her sled and packed her into her snowsuit. Soon after, we were off to explore our neighborhood. The streets were quiet and the sun joined us on our walk from its spot behind the clouds. Lauren loves sledding, she lies there bundled up watching me walk next to her while daddy pulls her ahead, she looks peaceful.

It’s amazing how a child can remind you how beautiful the world is. Lauren has this ability to bring me back to my childhood, aiding me to see how the smell and sights of winter can be wonderful. More than ever I’ve been noticing the beauty of the world around me, I often find myself looking out our windows at the trees and birds in our backyard. The shimmering sun off the icy snow can be really beautiful. Sometimes it’s this beauty that brings me sadness, I’m sad that Lauren’s time on this world is limited and that she wont get the chance to really experience the world like another child her age.

This past week has been a mostly positive one for our family. Lauren’s recent increase in Baclofen (a muscle relaxant) seems to have helped in making her more comfortable. She still has moments where she is clearly in pain but thankfully they are short-lived. I’ve been noticing that she is a lot gassier this week than usual, I’ve had to make sure that I vent her stomach after every meal to help her. Poor baby! Have you ever had bad cramps from eating the wrong thing (that may have seemed so right at the time 😉 ) imagine living with those cramps every day and not being able to properly work it out on your own.

This week I spent a lot of time dancing with Lauren around the house, our favourite show is the Much Music Countdown. Her and I love to spin around the family room to all of the new videos. Lauren makes the cutest faces when she dance, and sometimes she even lets out a coo letting me know that she is happy.

On Wednesday the cutest thing happened, Lauren Laughed. I was dancing around the family room with her and Stephen was washing dishes in the kitchen. It was such a fun moment that Lauren and I wanted to include daddy, so we danced right up to him at the sink, upon which he let out a happy “Peek a boo”. Lauren loved this and let out s very small giggle – of course this led to us repeating it over and over to see if we could keep it going. She only laughed once or twice more, but it was obvious that she was thrilled.

Thursday was dinner night at Grandma and Grandpa’s house. Lauren had a really fun time watching TV in Grandma’s arms, having discussions at length with Grandpa, and getting many kisses from her big brother Oscar. Oscar is our dog, he has been staying with my parents since Lauren’s diagnosis. He’s a good boy around family but can seem a bit aggressive with strangers, and considering the fact that he weighs 120lb we decided that it might not be the best to have him at home when lots of people had been stopping by to check in on Lauren. Additionally the weather has been so cold, and with Lauren hating her stroller I couldn’t give him all the walks that he needs. I’m looking forward to bringing him home when the weather gets nicer, in the meantime he’s in very good hands.

On Friday we all went to the Mackay Rehab Centre to get Lauren fitted for an adaptive stroller (i.e. child wheelchair). It was a great experience, we felt like we were in good hands and are really excited to get the new equipment for Lauren. I even cried a little when they mentioned that they were going to order us a device that would allow us to snap the chair section out onto a roller in the house. The device has a lift so Lauren can join us comfortably at the table! This also means that I will have more freedom as I can move her around the house with me. This is HUGE! Leaving Lauren on her own for even a minute or so at a time scares me, she has had a few instances where she has started to choke on her saliva so leaving her alone for any space of time can be a worry.

Lauren trying out the Otto Boch Kimba Basic, we should get ours in a month! (Note that most accessories are missing, hers will have more neck and body support)

Lauren wearing her new Tommy Blouse, Thank you Alex!

Twins! Lauren and Teddy in Matching outfits. Thanks Nikhil and Rina!

Surprise! This is our other baby Oscar, as you can see he is a majestic beast 🙂

Related

15 Responses to “A week in February”

I have the same bear, in blue. I sleep with him every night. He is the replacement for my little Silas. You are such amazing parents and I hope and pray that you have a long, long time left with little Lauren. She is precious.

Sounds like you’re really enjoying the snow. I remember those fantastic winters in Mtl. We had a few cms. here last night but it’s all melting this morning. It’s really like living in a different country. We used to live directly across from the Mackay Centre. Perhaps you remember, as we all congregated there for holidays, at great uncle Pete’s and great Aunt Nellie’s. Lauren does look quite comfortable in that Otto Bach Kimba Basic even without the extras. I’m sure all of you will be delighted with the added roller feature and the lift for the table.

Mom (Nellie) has good days and bad days so when I think I can travel to Mtl., it turns out not to be a good day for travelling. She’s doing pretty good, otherwise. When I showed her the pictures, she couldn’t stop laughing at Oscar. She said, “He’s not a dog, he carries himself like a prince”. She thinks Lauren is just gorgeous and cannot see enough of her pictures. I project them on the 40″ TV screen so she can really see them clearly. To tell you the truth, we all appreciate them more this way.

This most challenging and yet wondrous experience of motherhood, Amanda, has pushed you rapidly through the door of the writer in you.Your writing is truly a magnetic force. You make me feel as though I’m right there walking with the 3 of you pulling Lauren’s sled through the snow. The raw honesty, the deep faith, the rare optimisim and the unquestionable touch with reality felt in your every passage truly moves me to a place of gratitude. Your family is always in our thoughts and your generosity in sharing these moments with people who care means so much.

So true and well said of Amanda’s writing skills which keep us waiting for the next update!

Stephen and Amanda truly lead by example of what parents are called to do to love their children in the most challenging situations – there are no rule books for these situations when taking prenatal classes.

The three of you have been in my thoughts all weekend so it was wonderful to have news this morning. I am glad there are still giggles and that life will get easier with the addition of the Kimba. As Valentine’s day reminds us that the love we have for each other is so very precious, so does your blog.

Life is so precious and love doubly so. Love to all of you – Aunt Janet and family.

P.S. My baby seems to be happy up in Chasasibi on James bay, he seems to have finally stood up on his own feet! Can’t wait to hear all of his stories.

I pray for Laureen often and every time Silvana sends me a new picture of her I feel so blessed to have the oppertunity to share a little of her live and pray for her, she is truly a gift from GOD. Thankyou Rosemarie

Wow, what a great family morning walk–I could picture it in my mind too. 🙂 As for the adaptive stroller/wheelchair thing, I was just wondering–is the wheelchair a “forever” thing, or is Lauren just going to take a bit longer to learn to walk?

Emily, Lauren is dying of a Neurodegenerative disease. Unfortunately her motor skills are all regressing, she cant support her head or sit anymore. You can read more about the disease on the “About Krabbe disease” page.

Actually, Amanda, I read that section of your webpage, and I looked up Krabbe disease on Wikipedia too, but just seeing what a beautiful baby Lauren is, and the positive and uplifiting way you write about her, and photograph all of the happy moments of her life, well…….just seeing all of that makes me wonder if maybe she can beat the odds.

Hi Lauren and thank-you so much for that ‘ton of tiny Lauren kisses’! The love in those beautiful blue eyes is bigger than life itself. You light up my life every time I see your beautiful face. You’ve already learned to simply suck up all that love around you, and, Lauren, you know how to reflect it. We could all learn from you.Thanks so much.